Archive for June, 2013

What, you don’t have piles of scarves at your disposal, crafted in efforts to avoid over-eating? Yes, yarn is part of my diabetes arsenal … didn’t see that one coming, did you? (I didn’t. Also, I’m old. Also, speak up so I can hear you, young whippersnapper, and when you’re done, get off my lawn!)

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It was sitting in traffic on the way to Boston for an endocrinologist appointment, spending more time in the car than in the actual care of my medical team. The appointment was fine, and my A1c still holds steady in a range I’m comfortable with, and I even brought print outs of my meter results and a list of questions I had, but it felt like a wasted day. A whole day. I’m over it.

While I was printing out the meter data, I ended up a little pissed off because I couldn’t find the charger for my ancient PC, which meant I couldn’t boot up that computer, which meant I couldn’t download my Dexcom data.

A pump site completely gave up on me without any warning what so ever, with the tubing disconnecting from the housing cleanly and neatly and quietly, leaving me without insulin for an undetermined amount of time and bringing 6 am crashing in with ketones and the kind of thirst that you find yourself drinking gulps of water from the bathroom faucet without pausing for breath or to consider your canine behavior.

Another pump site came off too early (not even through day two) due to going to the beach and getting sandy and soggy. A third pump site left one of those scaly rings that aren’t uncomfortable but are a visual reminder of where the device was once resting.

A CGM sensor came fresh out of the unopened packet with the adhesive edging all gaffed up, making the brand-new sensor completely unsticky and essentially unusable. Yet I still tried to use it out of defiance and conservation, but it wouldn’t stick and was useless within a few minutes. Waste of a perfectly good sensor.

I pulled another CGM sensor off my body while I was traveling last week, during a low I had while I was sleeping. I remember reaching down to rub my leg (when I should have been reaching for glucose tabs) and gripped the side of the sensor and pulled it off. I guess I wanted to stop the beeping, which had been going on for over twenty minutes. After the low was over and I woke up to start my day, I grabbed a new sensor from my suitcase and stuck it on. Thankfully, I had a spare with me. I always have a spare something on me. I prepare for this stuff, and I’m doing all the necessary tasks to properly attempt management of my type 1 diabetes. My blood sugars are good. My averages are good. I should be feeling good.

But at the same time, I’m over it.

And it’s not just the diabetes tech bits that are fueling my fire of frustration. During the course of the ADA conference, all of the walking contributed to several lows that were nagging and stubborn. Same for when I was traveling earlier in the month – lows that just cling and make my mouth go numb and my jaw feel unhinged, fogging up the lenses of my synapses. Not fun, and made for an especially heavy purse, since I needed to carry so many extra glucose tabs while I was on the move. (That, and I think I brushed my teeth seven times one day to keep from becoming a clearing house for cavities.)

That’s how I’ve been feeling lately: so over it. Aside from good lab work results at the doctor’s office, diabetes has been a pain in the ass lately, and I’m tired of its antics. All the news I’ve received lately isn’t awesome, and I’m dealing with that as best I can. I’m frustrated by technology. Tired of the devices. Enough with the toting around all the nonsense. Enough with the lows. Enough with the highs, too. Eff preparedness. I just want to leave the house with my car keys, not the contents of my medicine cabinet. I want to go for a run without bringing tabs or caring what direction the arrows are pointing. See also: a momentary “waaaaaah.”

Reading about the bionic pancreas put words to my “meh.” My brain is never quiet, never still, because of the work that goes into achieving the baseline that people without diabetes take for granted.

It’s not diabetes burnout. It’s not depression. It’s not a period of rebellion or particular frustration. I’m sure I’ll shake off this funk in a few days (a proper night’s sleep wouldn’t hurt). But I’ve hit a wall in the last few weeks, and it’s everything to do with diabetes. I’m ready for a day off. I’d like to wake up in the morning and take care of my family and my work without giving blood sugars and all their assorted bullshit a second thought.

I’m over it.

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Bullet points – for those moments when sentence structure is too much of a challenge and thoughts are melting like butter on a frying pan (which, for the record, is the second best smell ever, after Bounce dryer sheets).

The ADA Scientific Sessions were informative and exhausting. My brain is tired from trying to absorb a ton of information and process dozens of conversations, my legs are tired from doing laps around the convention center to attend sessions and explore the exhibit hall, and my eyelids are tired from being forced to stay open for the better part of four days.

And in line with that thought process (see? I’m becoming linear as the coffee sets in), I love this post from PWD/HCP Michelle Sorensen about The Two Words Patients Most Want to Hear. (I’m also looking forward to presenting with Michelle on diabetes and social media at this fall’s Canadian Diabetes Association annual meeting. /sidenote)

I need someone to come to my house and physically force my finger to press “delete” on the Candy Crush app on my phone. It defines “wasted time” but I still come close to being blinded by glee when I am able to complete a row of five candies and get one of those freaking chocolate-ball-with-sprinkles things.

Please don’t judge.

Actually, please judge. I need help.

I can’t explain how I fell into this web-based wormhole about diabetes and parrots, but I did. And I’m not sorry.

My daughter is so excited to attend the Friends for Life conference that, in her mind, “the conference” has replaced “Magic Kingdom” as the highlight of Florida for her.

This is the funniest thing I have seen in my life. The Oatmeal never disappoints, but sometimes it startles me. I was flipping through while at the airport in Chicago and came across this photo. It’s horrible and slightly NSF (unless you work somewhere with sassy standards), so click with caution.

And lastly, Kelly Close test drove the bionic pancreas as part of the BU/MGH study, and her write up is fascinating. This quote had my heart in knots: “I feel forever changed, having been part of this research study, and now knowing (albeit only for a week) what “normal” life was like before diabetes – not having to carb count, not experiencing any hypoglycemia, not feeling tired all the time, and not having diabetes on my mind every five minutes.”

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Sometimes it’s not about the actual “pricking of the finger” but more the “finding out what the number is.” Here’s a new video post about the power of knowing your numbers, in efforts to not wreck yo self.

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Will you be at the CWD Friends for Life conference? There’s panel taking place, discussing “Social Media & The Monster Under the Bed: The Latest Thinking on Fearing vs. Embracing Social Media,” focusing on efforts to validate the role of peer-to-peer support in diabetes management. Here are some details:

I am proudly involved with this project, and am inspired by how the diabetes community supports each other, with that support contributing to improvements in all facets of our diabetes health. The people involved in patient communities are what matters. From an article I wrote in diaTribe a few months ago (but it still rings true for me today):

“Through connecting online, and in person, people living with diabetes have concrete proof that they are not alone, and that there is health worth fighting for, even after a diabetes diagnosis. Social media has saved lives in the diabetes community. It has helped people who are struggling with their diabetes to take control and improve their health. It shows people that there isn’t such a thing as a ‘perfect diabetic,’ but there can be an educated and determined one. It lets people know they aren’t alone in the ebb and flow of their diabetes management. It doesn’t encourage people to wallow in their troubles, but serves to inspire them to do the best they can, and to seek out the best healthcare they can find, both at home and in their doctor’s offices. A strong support system goes a tremendous way in making a difference for someone living with diabetes.

… I hope that the results prove what we as a community have found, but while we wait, we continue to share our personal evidence of the positive impact of social media. For now, the evidence is anecdotal. Eventually, the studies will show what we, as part of the diabetes community, have felt all along: personal connections between patients matter. The proof, for us, is in the people.”

I hope this discussion is the first of many. If you’re at CWD, please sign up! And if you are off-site, you can attend virtually by signing up here. For more information on Partnering for Diabetes Change, click here for a PDF.

In efforts to truly test the app, I went all in and embraced the monster. Which is why I’ve spent the last few weeks playing with the mySugr app, developed by a team of PWDs in Austria. One of the team members, Fredrick Debong, and I had the opportunity to hang out again last week at Doctors 2.0 & You, and I remain impressed with his approach. It was refreshing to see a long-time T1D’er (dx’d at the age of four) taking on his disease in a very new, very inspiring way. Regarding mySugr, Fredrik offered, “With the mySugr Companion, we turn diabetes therapy and logging, a normally tedious chore, into something exciting! My personal inspiration for the app is based on my own life with diabetes – now approaching 30 years, which also include a three-year stint of diabetes burnout. If the mySugr Companion can make us smile while pricking our fingers, take pleasure in our small daily victories and feel the progress we make, then we change our world for the better.”

I’m all about small victories. Let’s dive in!

Per the set up instructions, you’re encouraged to name the monster, so I went with the current arch nemesis in our home: Norman Price. (If you’re not hip to Fireman Sam, Norman Price is this little jerkface who lives in the town of Pontypandy and seemingly lights everything in a fifteen mile radius on fire. He’s good for keeping the firemen busy, but life would be much smoother if Norman Price was shipped out to sea. Hence, Norman Price became my diabetes monster.)

After filling out the settings tab (offering up information like “on an insulin pump,” “measuring blood units in mg/dL,” “carbs measured in grams,” and setting the hypo and hyper thresholds), I was ready to roll. And still a little skeptical, because I’m wary of most apps. I wonder how long the quantified self apps can hold my attention (even though, in full disclosure, I have been using the RunKeeper app since last November).

Inputting data on this application is easy, and graceful, not a clumsy casino game-esque scroll bar or a tangled web of things you need to click on. Hit the plus sign, enter the glucose value, and any other details you want to make note of. The one line that didn’t make it into the screenshot here was “Notes,” which to me is the best line ever: an open field to put in whatever you’re feeling. There were several open field note options throughout this app, which is brilliant because, try as they might, app developers cannot make a drop-down menu long enough to cover all the different variables that impact diabetes management.

I also liked how there were some standard, and cleverly illustrated, “tags” you could use for data input:

Each data point logged, and tag added, and note noted, earns “points” for the user, which are tracked on the home screen. I find logbooking to be tedious and boring and lacking any/all incentive (because the reward for good behavior is … to do it all over again?), so even simply seeing a point value climbing as a result of my efforts to stay on top of things makes enough of a difference to keep me attempting to earn.

I’m only experimenting with the standard version right now, but am thinking about upgrading to Pro. In the meantime, I’m trying to earn a few days of Pro by use of Challenges. For example, I’m currently working through the Greenhorn Challenge, which encourages me to input enough logging data to earn 50 points, at which time I’ll be awarded one day of Pro use. Sounds like low-hanging fruit, incentive-wise, but it works. Which is probably why it’s hanging so low, yo.

A few things to change? I’d love to see a reminder – that you can CUSTOMIZE – for updating your logbook. While I might throw the phone if it nagged me, having a reminder that I can set/unset (“It’s been six hours since your last glucose test!!”) would be handy. I’d also like to see an open field for inputting exercise, as I don’t often exercise in perfectly round numbers, and it would be great to see an illustrated tag field in the future for exercise options. Basically, I’d love to ditch RunKeeper and have mySugr take over entirely, logging everything. The reports function is nice, as far as PDFs go, but having something I could export into an editable document would be more useful, for things like basal rates, insulin-to-carb ratios, etc.

I also need to mention the sounds: THEY RULE. I know how goofy it sounds, commenting on the little whizzes and clicks of an application, but the sounds on this app are faintly robotic, and I feel like I’m virtually ticking something off my To Do list when I tag a data entry or enter a blood sugar. Even when you press the “monster” and he squeals for attention, it’s entertaining and borderline cute. A++ for sounds on this app.

It’s hard to say how long I’ll keep at using this application, since I’ve only been using it for two weeks. But, to be honest, it was kind of nice to feed the monster and feel a little removed from it. Or maybe freed from that need to be all harmonious with it. By distancing myself from it and letting myself treat it as a task-oriented “game,” it makes the philosophy of “test, correct, and move on” easier to adopt.

And Birdy loved it, which makes me like it more. She likes clicking on his avatar and seeing him flap his arms around and squeal animatedly. She likes hitting “done” when I finish entering meal data because that’s when Norman simulated chewing and says, “YUM!”

“I want to see the little Norman Price diabeedles guy. He’s so frustrating sometimes, isn’t he, Mawm? But not all the time, right, Mawn?”

“You are so right, Birdzone.”

Want to download the application and take it for a spin yourself? Click here to go to iTunes. You can find out more information on the mySugr website, and learn about the Companion version, as well as the coming-soon Junior version. And you can learn about the Monster Pack (aka the development team), too. mySugr makes the monster easier to manage, even if he’s a sometimes frustrating, but not all the time, kind of guy. Clever application, and one that I can see inspiring PWDs around the world to take their monster to task.

Disclosure: I don’t have any financial anything tied to this company. I like Fredrik, and he asked me to try out the application. So there you go.

HON Code

DISCLAIMER:

I am not a doctor. I am not a certified diabetes educator. I have no medical degree. Nothing on this site should be taken as medical advice, and if you are taking it as medical advice, I suggest you contact your doctor immediately for issues other than diabetes.

This is my diabetes life - if you are interested in making changes to yours, you need to consult your doctor.

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